Casein-free formula--please help!

[Mags]

My 8 week old nephew is casein intolerant and is suffering miserably. My sister has cut out lactose, but is still breastfeeding on the advice of her doctors. I told her I would try to find her some recipes for casein-free formulas. Can anyone please point me in the right direction? This is her fourth child, and she is really struggling.

Please help us,

Mags

[TooManyHats]

Try here:

http://www.gfcfdiet.com/Beverages.htm#Infant Formula

Unfortunately, most of the alternatives are soy.

[Mags]

Unfortunately, he reacts to soy as well. All of her babies have been born with severe GERD, but this is the only one that has had the casein problem as well. Or at least, the testing has been available. Her husband is a doctor, so she has a healthy skepticism of just how much they know...

I have come across some homemade recipes somewhere, but I can't remember where. I am hoping someone on the forum can point me in the right direction.

Thanks!

Mags

[Zizzle]

Shouldn't the baby be on a hypoallergenic hydrolyzed formula like Nutramigen or alimentum? They are made with milk but the casein is completely inactivated. Mom should cut out all dairy from her diet too. The casein will be out of her breastmilk within a week or 2 max.

[mbeezie]

It's so hard ot watch newborns suffer with these symptoms. My heart goes out to them.

I agree with Zizzle. If mom is breastfeeding she needs to avoid the foods the child reacts to. If he is on formula there are appropriate commercial infant formulas for casein allergy. She might want to see a dietitian who specializes in pediatrics if she doesn't trust the doctor. They will up-to-date on the latest/best products for this situation. Homemade formulas are generally discouraged - need to make sure the baby is getting the proper amounts of all nutrients.

Take care,

Mary Beth

[Mags]

As I said in my initial post, she has cut out all dairy from her diet. However, the baby is still having problems. She is seeing a pediatric dietician, but as all of her babies have had digestive problems, she is still looking for other options. Thanks for your suggestions about the formulas--I will send them to her. She is such a great mom--she feeds her kids only organic, non-gm food and really nurtures their individual personalities.

It's not that she does not trust the doctor--she is just aware that doctors do not always know everything: this is why I told her I'd come to this forum and ask for suggestions!

Thanks,

Mags

[Zizzle]

My sister has cut out lactose, but is still breastfeeding on the advice of her doctors.

Mags,
Your post said she cut out all lactose from her diet, so I assumed she was still eating lactose-free dairy products which contain casein. She has to be completely dairy-free and soy-free too (since the baby is reacting to soy). Even then, it can take 2 weeks to get the residual proteins out of her breastmilk.

[Mags]

Sorry we had a misunderstanding, Zizzle.

Nope, she's completely dairy and soy free. She has been soy free for a while over GM concerns, but has been completely dairy free for about 6 weeks now. She also has a 3 year old, a 6 year old, an 8 year old, and now a newborn, so I told her I'd try to help her out. She has always breastfed her children, so it is a very difficult decision for her to even think about putting the baby on formula. It is also very emotional for me, as I have no children, and my niece and nephews are very close to my heart. When he is in such pain, and I know exactly how it feels, it just breaks my heart. I've got tears in my eyes right now.

Love,

Mags

[Zizzle]

How do they know casein is the problem? Could he have a sensitivity to galactose, the sugar in breastmilk? Is he growing OK? One of my best friends breastfed religiously but her son would never take more than 3 ounces at a time and wasn't growing well (she was pumping by then). He was miserable...they both were! After 9 months they discovered he had a glycogen storage disease (genetic enzyme deficiency), and he had no business having milk of any kind, even human. He is thriving today on a slightly modified diet, including corn starch drinks in the middle of the night to keep his blood sugar up. I don't mean to scare you, but sometimes you have to look deeper than the usual suspected intolerances.

[Mags]

Zizzle--

They know casein is the problem because he has had extremely extensive testing. All three of her previous children were born with severe GERD, so at first the doctors thought that was the problem. However, the meds that worked for her other children did not work for the baby, so every test possible was done. I can assure you they left no stone unturned as her husband is a surgeon at the hospital where her pediatric team is located. He is a quite intense person, and my sister is no pushover either, so they really did test for everything.

Thanks again for your concern,

Mags

P.S.

He is growing well. As a matter of fact, he is quite the big boy--not fat, just big.

[TooManyHats]

I hope they find something that works for him. How heartbreaking it must be to watch someone so small suffer like that.

[Mags]

Arlene-

It is heartbreaking. He is the only baby out of my five nephews and one niece that I cannot hold for any length of time. The rest of them still snuggle up to me, as they all used to fall alseep when I held them as babies. I would hate not to have that relationship with him. My sister, Jill, is very determined to do what is best for him so I am sure we will find an answer soon.

Much love,

Mags

[harvest_table]

My 8 week old nephew is casein intolerant and is suffering miserably. My sister has cut out lactose, but is still breastfeeding on the advice of her doctors.
Mags

Breast milk contains casein whether mom eats dairy or not. What's debated is whether the casein in breast milk is as harmful as the casein in cow's milk. Casein is milk protein, so where there is milk, there is casein- think about it- cows eat a casein-free diet too (and, if they're pastured, a gluten-free diet to boot) and _their_ milk contains casein!

I've heard of moms whose children only showed improvement after they've weaned.

http://webcache.googleusercontent.com/s ... google.com

Hope your able to find a suitable formula for the little one asap.

Love,
Joanna

[Mags]

Joanna--

That is one of the things Jill and I talked about, which led to my search for casein-free formula. As a last resort, her pediatric specialist has put the baby on pediatric probiotics. If these don't work, I have sent her a list of 4 formulas that are soy-free and either have no casein, or have had their casein deactivated.

These kind of intolerances run in the babies of our family. I was intolerant of cow's milk, my first cousin was intolerant of EVERYTHING (I still can't stand to smell goat cheese!), and so on.

Thanks for the info, though. It feels good to know that folks are making sure nothing falls through the cracks!

Love,

Mags

[MBombardier]

Hmm.... I didn't think about posting this question to the board. I have a friend whose little boy is almost three months old and weighs a couple of ounces less than he did at birth. She is breastfeeding, but has cut out dairy, and supplements with (I think) Nutramigen. The pediatrician said that they needed a pediatric GI.

I will mention glycogen storage disease to her tomorrow.